Oh, is my hair loss from chemotherapy inconveniencing you?

For those of us who take forms of chemotherapy for our disease, it’s a pretty big deal.

It’s bad enough that we get flak from the cancer community for using the term “chemotherapy” when explaining our biologics, when that’s what it actually is! I get that some of us aren’t on the high doses that cancer patients are on, BUT IT IS STILL CHEMO AND IT STILL HITS US HARD. It’s not a competition to see who’s on the worst drug or dosage.

I’ve been on biologic infusions for a couple years now. That means that I willingly consent to toxic chemicals being pumped into my body in the hopes that it makes me well. Sometimes, they do. I have unfortunately been on the other end of that a few times. The last time my body didn’t like chemo, the backlash consisted of multiple heart attacks and an eight day stint in the ICU.

It’s not a competition, so don’t tell me the chemo I take doesn’t have a toll. I get nauseated and vomit for hours. My body turns to lead and I have to sleep like the dead for up to 20 hours sometimes, just to recoup. AND my hair falls out.

Its gotten better over the years. The first time I went on chemo it came out in large clumps, to the point where I had to cut my hair short to hide the gaps. These days it doesn’t fall out en masse. But it does fall out! I have strands all over my floor, all over my pillows, and all over my bed and sheets. It sticks to my clothes, and it stands out cause I’m a redhead these days. You really can’t miss it.

It makes me very self conscious. You don’t need to tell me my hair is everywhere, I KNOW. No one knows better than me!

Most people are pretty cool about it. Sometimes they pick it off me discreetly, or mention I have a chunk sitting on my shoulder. I blush, take care of it, and we act like it didn’t happen.

You know what’s not ok?? Acting like you’re put out because my hair is in your vicinity. I’d love to not have my hair fall out, but I didn’t choose to be chronically ill, and I certainly don’t love being on chemotherapy. Have some fucking sympathy or compassion. But saying “Ew your hair is everywhere” or refusing to touch things in MY room because the hair “grosses” you out… Like are you serious?

How entitled do you have to be that you shame me for something I can’t control and hate about myself?!?! That shit is not ok. And while in my naivety I may have put up with it in the past, I will not longer.

No one in any circumstance is allowed to make you feel bad about yourself or your circumstance. EVER. That shows their insecurities, not yours.

So that will no longer fly with me. Nor should it for anyone else.

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Size Does Matter 

For as long as I can remember, I’ve thought I was overweight. Literally, even as a child, I was aware that my tummy protruded just a little, that I had a round face, and that I didn’t have the same body as some of my friends. Of course, when you’re nine years old, things like weight don’t really ‘measure up’ in your world. As a nine year old, my day to day thoughts were mostly consumed by whether or not I was going to be able to collect the entire set of Looney Tunes mugs from KFC, or which of my friends my mom would let me have a slumber party with on the weekend. As a rule, nine year olds, or really any aged child for that matter, could care less about their weight. It doesn’t even register as a blip on the radar. The only way would be if someone were to tell you, to explain to you why it would even matter.

For me, this person  was my father. For as long as I have memories of him, those memories included him telling me I was overweight. Memories of us hiking when I was a kid, pointing out the reason I was tired and lightheaded was because I didn’t exercise enough, and that had to be the reason I needed to take breaks. Or telling me not to eat the bread that was set on the table at restaurants, because I already had a “belly”. Comments and situations like these were commonplace to my youth, even prompting me to beg my mom to let me stay home with her, instead of going to my dad’s every other weekend, per the divorce decree. When I was thirteen, my father took me aside and asked me if I was pregnant, because how else could I explain my fat stomach? This, as well as every other weight related comment, infuriated my mother, and bewildered me. Because the truth was, I was quite the gangly child.

Until I was ten years old, my mom and I lived in Makiki Heights, also known as Tantalus, an extinct cinder cone on the southern end of the Ko’olau Range on Oahu. Tantalus, was and still is a lush peak with thick rainforest, full of hiking trails, and dotted with older homes as well as more modern upscale estates. We rented a small apartment on the ground floor of a converted farm house, that sat on a large lot that was shared with the house of the owners. Growing up there was like living in my own personal Wonderland. Our garden/yard stretched far down the hill, and my neighbors yards were easily accessible if you didn’t mind squeezing through the wire fence. I was the epitome of a tomboy, and spent a lot of my free time running around, playing hide and seek, and getting into mischief with the three other kids I had as neighbors. So, to be called “fat” or “lazy” was incomprehensible to me.


I know what you’re thinking…. Geez, did she like pink… This is true. I did like pink. And cats. But I can guarantee you’re also thinking ” This kid was not overweight”.

I’d like to say as I grew older I started to fill out and lose the skinny, gangly look I had going on. But, alas, I was to maintain the “stringbean” look well into my teens. The comments never stopped either, so despite my slim figure, I always thought I was overweight. Because we tend to believe what people tell us. Not just our parents, but society as well. I grew up reading Cosmo Girl and Seventeen, just like every other hormonal teenaged girl in America. Those magazines told us what we should look like, what we should wear, how we should talk and act…and we believed every word. Why wouldn’t we? They printed it right? And all the celebrities and models were all bone thin and gorgeous, living the dream… Perfect house, perfect car, perfect wardrobe, perfect guy. The American Dream. Or at least what it looked like from a fifteen year olds point of view. And I was raised under the ideal of “Size Matters”. “You won’t get anything good in life if you’re fat.” “Beautiful people are winners.”

The funny thing is though, that once I hit eighteen, I grew out of that bullshit. I don’t know  exactly when it was that I stopped buying into the “skinny” hype. All I do know is that at some point I turned a corner, and I just didn’t care anymore. Could be around the time that I started to really enjoy my body. I grew breasts, and small as they were, they got the amount of attention I needed. My “stringbean” body went from straight up and down, to voluptuous curves. And somewhere in there, the shyness of my youth (when it came to boys), melted away. Suddenly, not only did I know I was attractive, I relished it. And while, the comments never stopped, I no longer needed validation from a parental figure to feel good about myself. If having wide hips and a round face meant that I was fat, well then, I guess size really didn’t matter, right?


 

God I hate it when he’s right…

Fast forward seventeen years. 

Here I am at thirty five years old. I’ve lived a very full life for my years. I’ve visited over 25 countries, and lived in at least 3. I’ve had a serious long-term relationship, attended university, won the lottery, and jumped out of an airplane (on purpose of course). And last but not least, I’ve been diagnosed with and suffer from a chronic and debilitating disease. A disease, that in the three and a half years since I was diagnosed, changed my body and mind in ways that I didn’t think was possible.

Three and a half years of being on the steroid that I once naively named “the arthritis cure”, having no idea the long term effects that it would wreak on my body. Turning my once beloved curves and perky breasts, into the prison of fat that I have been forced to become accustomed to. My reality is the woman that looks back at me in the mirror now. This unrecognizable woman, with her Cushingoid “Moon Face”, sunken in eyes rimmed with dark circles, and a body that looks  like she’s carrying triplets. 

I used to feel beautiful. I used to adore my looks. I was once a confident woman who thought she could have whatever she wanted, if she really wanted it. I was a boss. I knew exactly where my place was in the world. I was winning. 

This is where I hate how he was right. How society was right. I hate that I have to admit that. It pains me to say aloud that “Size Does Matter”. Because despite now having an invisible disease, nothing about me has physically changed, except for my weight. And yet I feel as if I’ve lost everything…

Since significantly gaining weight, I’ve lost the majority of my friends. Yes, I know you’re going to say “Well, they weren’t very good friends if they left you in your time of need, were they?” And that’s true, but it doesn’t mean that it doesn’t still hurt. Most of them just slowly  drifted away, becoming too busy, or too occupied with their own lives. I know this can’t all be blamed on appearances. A lot of this can also be attributed to just not wanting to be attached to the stigma of someone who is sick. But it’s hard not to draw the parallel.

Then there’s my dating life…  Since college, I have never gone longer than four months without a companion in my life. I’ve always had dates, or boyfriends, or “friends With benefits” or something. I’m really not as codependent as I sound, I promise. I’ve just always  enjoyed having a partner in crime, someone to share my life experiences with. And I’m sorry, but there is NO WAY IN HELL that my sixteen month drought doesn’t have to do with my increasing size!

Size Does Matter!

No matter that I am a strong and capable woman, or that I am an educated, well read intellectual. That I have traveled more extensively than most of my high school graduating class, and visited more countries than I can remember the names of. No matter that despite having a chronic illness that has caused me to have heart attacks, and through medications caused Osteoporosis and Lymphoma, I am still here standing tall. My disease has not defeated me. But maybe the stigma of my new size has. 

I don’t feel attractive anymore. I can’t honestly say “I’m beautiful”, because I no longer believe it. I feel fat. I see pictures of myself and I cringe. It literally looks like I’m pregnant with an entire litter of puppies. And the smiles from strangers have stopped. No longer does the cute waiter at the local diner give me free refills. I’m not the cute girl I used to be. And I try so hard to not let my looks define me as a person. But it’s hard to leave behind almost two decades of another way of life. This is not the woman I want to concede to. But as long as I’m on this drug, my doctors say it’s near impossible  to lose the weight. And I can’t get off the only drug that works. The only one that keeps me moving, mobile, alive.My reality is that this steroid is saving me. But what have I lost in return?

What have I lost in a world obsessed with the fact that Size Does Matter?

Why I follow my doctor’s instructions

Anyone who has a debilitating disease or chronic illness, and is on a lot of medications, has had to sit through the “But what if?” conversation (or in some cases, lecture) at least once.

You know exactly which conversation I’m talking about. It usually comes from a concerned family member or friend, someone who’s done a lot of reading, especially on the internet. They back up their reasoning with a lot of memorized facts, new found statistics, and the sworn testimony of at least one doctor that you’ve never heard of, but is apparently a huge deal online or in Miami.

The content is always the same and always concludes with “Why don’t you try going off your medications for a few days and see what happens?”

Or,

“You’re just putting bad chemicals in your body. What if you just stopped taking the steroids and see how much better you would feel?”

And 50% of the time, these questions are followed with,

“It worked for this guy I read about,” or, “My good friend’s cousin went off his pain meds, and he cured himself.”

I’ve said this many times, I’m very close to being labeled as a broken record, but I’ll keep saying it as many times as it takes to get the message across: Every case is different.

What worked for someone in Kentucky, may not necessarily work for someone in Washington. There are so many factors you have to take into consideration! Do those people suffer from the same disease, and if so what is their severity level? Which medications are they on, and how long have they been on them? What kind of treatments have they tried? What are their allergies? How long have they been sick?

There is a legitimate reason why doctors tell their patients to stay on their medications. It’s not so they can make money for Big Pharma. Sure, I have heard that some doctors get certain kickbacks for promoting a certain type of drug or treatment or surgery type. But those are treatment/medications for very specific illnesses, and I can guarantee you no one is getting a bonus for prescribing Prednisone. Everyone who’s ever been in an accident or had an inflammatory issue, has been prescribed Prednisone. There isn’t some huge cover-up going on here, these doctors are just trying to help their patients. They don’t want us to get worse. But you know what would make us worse? Going cold turkey off our meds.

You know when you pick up your medications from the pharmacy, and they always make you confirm your prescriptions right then and there before placing them in the bag? That’s to make sure you’re taking home the correct medicines. And you get an essay worth of directions in pamphlet form along with it, so you know exactly  what you’re putting into your body. They list what the medications are for, possible related side effects, and instructions on when to call your doctor if you think you’re having an emergency. And I can guarantee that nowhere in those pages does it say “Yes it’s totally alright to stop taking these without consulting your doctor.”

In fact, each time I visit one of my prescribing doctors offices to get a refill, I always get a mini lecture about drug safety. They always want to confirm that I’m still taking my medications, and that I’m on the correct dose, and that I can always get my refill in a timely manner. They always express how important it is that I have an overlap when picking up a new rx, so there’s absolutely no chance I have to deal with withdrawal symptoms.

See, I don’t think these concerned friends and family really think about what it means to just “stop taking meds for awhile.” And sure, I get it. As someone who doesn’t rely on daily medications to be active or mobile or pain-free, there is no real way for them to understand what going cold turkey would feel like. They’re just reading an article and thinking, “Hmm, this seems like a healthier option.”

Well, sure! Of course being on zero medications is healthier! None of us actually want to put hard core chemicals into our bodies! But we do it to survive! We do it so we can live active lives and be mobile. We do it so we can handle living with the pain. There are so so so many reasons we take these medications, but I’d say the #1 reason is we take them TO STAY ALIVE.

I found an article online recently about going off of pain medications without using a prescribed timeline from your doctor. See, when changing medications, especially pain management drugs or corticosteroids, you need to allow your body a very slow ease off the medications so that you don’t go into shock. Especially if you’ve been on those types of medications for a long time. They build up in your body, so it’s necessary to ease off of them slowly. I, myself, have been slowly easing off of Prednisone for the last year. Now, if I were to go from say 10mg a day to nothing-cold turkey, well… I’d be in the emergency room within the first 12 hours experiencing the worst withdrawal comedown ever.

According to http://www.mayoclinic.org & http://www.medicinenet.com without slowly tapering steroids alone, (pain management medications being an entirely other matter), negative symptoms can include:

  • Severe fatigue
  • Weakness
  • Body aches
  • Joint swelling/pain
  • Dizziness
  • Anxiety
  • Nausea/vomiting
  • Low blood pressure

And harsher symptoms can include but are not limited to:

  • Adrenal failure
  • Suicidal thoughts
  • Severe dehydration
  • Migraine
  • Paranoid Delusions

Um…Yikes! No, thank you.

You want me to go cold turkey off my meds? Well, I hope you’ll be there picking up the pieces of what that looks like. Will you’d be at my home first thing to help me out of my bed and into the bathroom? Will you be there to make all my meals, help me shower and dress, maybe even wipe my ass if my joint pain doesn’t allow me to even do that myself? Will you be with me day and night as I struggle with the excruciating pain? Will you sit with me while I cry because it hurts too much to even sleep?

Because that’s what we are talking about when you suggest that I just “Try not taking them for a week.”

We are talking about cold turkey, horrifyingly painful, medicine withdrawals. Withdrawals that I doubt you have scheduled yourself to be available for. And if reading articles about how to help people with debilitating illnesses is something you’re interested in, might I suggest the following websites:

http://www.rheumatoidarthritis.net

http://www.rheumatoidarthritis.org

http://www.invisibledisabilities.org

http://www.butyoudontlooksick.com

These sites are a fountain of useful information on types of diseases and disabilities, descriptions of treatments and medications, and supportive ways you can help people who are suffering.

How do I know that I would experience the kind of withdrawals those websites suggest might happen, you may wonder? Well, because I’ve experienced it before. Twice, under the supervision of my doctors, we have tried to taper my prednisone to almost nothing. The result was a living nightmare. I ended up in the ER both times, immobile, in horrifying pain, screaming. A. Living. Nightmare.

So, no thanks on the suggestions that I should try quitting my meds “just to see what would happen”. Cause I already know the result.

Death. Death would happen.

But I appreciate your concern and support, all the same.

In my ongoing efforts to support myself whilst waiting for my Social Security benefits to kick in, I am still asking for and accepting donations for financial help. Please check out my web page at http://www.gofundme.com/sixthousandsteps

I own a mirror & I know how to use it

When my doctor first prescribed Prednisone I thought I had found a cure. After just a couple months of severe pain, without knowing what was going on, taking steroids zapped it away like it was never there. I convinced myself that I wouldn’t even need other medications for my RA. I mean why take anything else when I felt so good on the Prednisone? But my doctor cautioned me that I could only be on steroids for a short period of time because of the many bad side effects that would happen. I truly thought he was overreacting or talking about other patients, certainly not me.

Over time we came to realize that a lot of RA medications didn’t work on me. Either I had allergies to them, I built up a tolerance, or they just weren’t strong enough against my ever growing severe disease. And so I stayed on Prednisone much longer than my doctor would have preferred. In fact three years later, I am still on it. True, my dose is much smaller than it was in those first days, but the side effects were still the same.

The weight gain started out as a slow crawl. In fact, in the first year of being on steroids I thought that I was just lucky and had escaped the side effects everyone else would bemoan. The telltale “moon face”, medically known as Cushingoid, wasn’t happening, and I seemed to be faring well with the drug. It wasn’t until year two that I started to see the change. Again, it started slow, and then suddenly I looked in the mirror one day and there was “moon face” looking back at me. The weight started really piling on around the 16th month. Now I can honestly say that I have gained 80 pounds while being on Prednisone.

80 POUNDS! Shocking isn’t it? At first it was most noticeable in my face and breasts, and I thought I could handle a puffy face and a bigger cup size. But eventually it moved to my belly and now I look like I’m 8 months pregnant. I am disgusted when I look at myself in the mirror. It’s not me looking back. It’s HER. The girl who has this life I never asked for. The girl who carries all this pain and sadness and FAT.

And the absolute worst part about all of it is that I eat healthy. I know of cases where people start to put on the weight and they just decide to let themselves go because why not, it’s already happening. But that’s not me. I care about my diet, and my weight, and my body. I have a very healthy food regime, I count calories, I do portion control, I rarely allow myself to snack, and yet.. Nothing I do helps. It just keeps coming.

A typical day of eating looks like this for me:

Breakfast- one cup of tea or coffee, oatmeal, and a piece of fruit.

Mid-morning- a cup of tea (usually Yogi detox or slimming tea)

Lunch- salad, or roasted vegetables and quinoa, or dinner leftovers, or a healthy sandwich

Dinner- 4oz protein (fish, steak, chicken), steamed vegetables, quinoa or brown rice 

And that’s it! Does that seem like the kind of diet that packs on the pounds?? No. My weight gain has nothing to do with what I eat. Prednisone is such a terrible terrible drug. I can look at a Snickers at the register at Safeway and gain two pounds, eating not required. The contents of my fridge are very boring. I have milk, cheese, juice, water, and fruit and vegetables in my fridge. My freezer is filled to the brim with bags of steamable vegetables, and frozen proteins. No ice cream, cookies, or chocolate. No pudding cups, or candy, or desserts. All I have is healthy food. My cupboards/pantry hold spices, oatmeal, soups, tuna, and rice. I don’t keep crackers or cookies or anything that could ruin my diet in the house, to avoid temptation.

And still, every morning I wake up and look into my mirror and see her. She won’t let me go. If only one day I will get to glimpse the girl I used to be, just once.

So you know what can be really hard to deal with, when I’m already faced daily with this depressing sight? A constant reminder that I’ve gained weight. Because, if this writing hasn’t already convinced you, I am very very aware of the fact that I have gained weight. I have successfully used a mirror every day since I was probably three or four years old. I know how they work. You look in, and you see what you look like. It doesn’t take a genius to figure it out. You don’t even need to be intelligent. My cats know what the mirror is, for goodness sake, and they love their reflection (good for them).

I know what I look like. I’ve been dealing with the changes every day for the last couple of years. I’ve dealt with the stress of trying clothes on in fitting rooms and realizing I’ve gone up another size. I’ve dealt with putting old clothes in storage because they don’t fit anymore, but I’m unwilling to part with them. I’ve dealt with learning new makeup tactics to slim down my face. Ive dealt with my hair falling out in clumps. I’ve dealt with less and less male attention as my body has grown round and unattractive. I AM AWARE THAT I’VE GAINED WEIGHT.

And in this very aware state of mine, you know what’s really unhelpful and hurtful? The constant reminder of the fact. You do not need to tell me. I already know. I knew before you had the idea in your head to tell me. I knew before you woke up this morning. I knew two years ago when you were still in denial that I was sick at all. Telling me what I already know serves no one but yourself.

I read a really great article today on RheumatoidArthritis.net talking about people giving unsolicited advice to people with chronic illness. The author made a really great point that I think can be applied here as well..

Dispensing unsolicited health advice to someone with a chronic or terminal illness (or any illness) isn’t really a way for people to help the sick person, but to help themselves deal with the harsh reality of sickness and their own mortality. It’s like picking on someone else to make yourself feel better. Don’t tell a sick or injured person what they should do, because it’s a sneaky and harmful way of dealing with your own fear of death,” “You’re saying, tsk tsk – I wouldn’t let this happen to me the way you’ve let it happen to you.”
“Giving advice to people…blames the sick person for your discomfort with their reality and shifts any accountability you feel back on to them. We have ethical responsibilities to the vulnerable in our communities – and we find excuses to avoid them.”

I could not agree more if these words came from my own mouth. In fact I’m sure the author and I share some sort of psychic connection. This statement while talking about giving medical advice to the chronically ill, can be used in the same context for weight gain for the same group of people.

We already know the problems that we face. We can see our bodies change and we know we have done everything in our power to change it. But there are some things beyond our control! It’s not like weight gain for a regular person. Our weight gain has nothing to do with binge eating, or portion control, or living on a diet of Oreos and McDonalds. Most of us with chronic illness are on very strict diets due to the medications we take. More often than not, we don’t even eat full meals because food makes us nauseated and/or sick. I’ve had days where I’ve eaten nothing but breakfast because for the rest of the day I felt nauseated and gross. Or just not hungry.

So when people give us ‘advice’ about how to handle our weight gain, it really comes off like a slap in the face. It’s insulting. Do you really think I haven’t tried everything I could possibly think of already to get rid of this excess weight? Do you think I’m just sitting at home twiddling my thumbs and eating a King Size Milky Way and lamenting about why I can’t lose weight? Trust me when I say I have tried whatever you want to suggest to me. I’ve done almost every fad diet out there. Gluten free? Tried it. Dairy free? Tried it. No/low carbs? Tried it. Only eating fruit til noon? Tried it. No dessert, sugar, salt, flavor, butter, fat (etc) of any kind? Tried it. Miracle supplements? Tried it. Vegan/vegetarian? Tried it. Lemonade diet? Tried it.

I’ve  tried everything you can think of and some that you haven’t read about yet but will tell me about as soon as you have. Please do not insult me and my intelligence by suggesting that I am sitting around doing nothing to combat this disease that has settled upon my body. And I’m not just talking about the weight gain here. I have tried numerous medications, treatments, remedies, and “cure-alls” in my attempts to fight my incurable chronic disease. For you to suggest otherwise is extremely insulting and disrespectful.

Perhaps instead of spending so much time telling me how I should better my life and my health practices you should concentrate on your own. Go ahead and look into that mirror and think long and hard about why it’s so important to you how I look and feel. Read over that quote again from RheumatoidArthritis.net and think about who this lecture really is for. Because I have my stuff handled. I am doing everything in my power to get well and fight this disease. I am very aware of my own mortality, and they way I live my life. So next time, before you want to share your “advice” about how I should handle my body, my disease, and my life, I urge you to look into that mirror on the wall and ask yourself who you’re really worried about. I think the answer may shock you.

 

**Excerpt taken from “Don’t tell RA patients what they could be doing to cure themselves” by Angela Lundberg on http://www.rheumatoidarthritis.net**

 

Thank you for taking the time to read my blog. If you would like to help support my fight against severe Rheumatoid Disease and Osteoporosis please visit my page at http://www.gofundme.com/sixthousandsteps